Friday, June 01, 2007

Diversity and Representation

Who can be a leader in the neurodiversity movement?

This question was raised in two recent posts by Laurentius Rex and Kevin Leitch. They ask: Should we be concerned that the parents who are blogging on the Autism Hub have a significant amount of influence in shaping the discourse? Are these parents somehow "hijacking" the neurodiversity movement and taking it away from its rightful owners, autistics (or people with psychological diagnoses in general)?

I don't think so.

That criticism arises from the disability rights motto "nothing about us, without us." And to the extent that we're talking about specific disability rights issues, I agree that the people who are directly experiencing these issues are the most qualified to speak about them. However, that does not necessarily equate to having a particular diagnosis. I would not, for instance, proclaim myself entitled to make policy decisions about augmentative communication devices simply by virtue of being autistic, when I've never used any such devices. Conversely, there are many non-autistic people who cannot speak and who use or could benefit from augmentative communication devices (because of stroke, head injury, etc.), and their views ought to be given substantial weight. More simply put, disability self-advocacy is about practical real-life needs, not parlor games with labels.

It's all very well to say that parents who have no disabilities should not be at the forefront of disability rights advocacy, and that makes sense as far as it goes; but I think we need to carefully examine just how far it goes, so that we're not conflating all sorts of other things with disability rights advocacy.

When we're talking about neurodiversity in the abstract, the concept encompasses much more than disability. It's about social acceptance of cognitive and behavioral differences, regardless of whether those differences are, or are perceived as, disabling.

To illustrate this point, here's a hypothetical situation: A young immigrant who was raised in a traditional Asian family graduates from school and gets a job with a large corporation. Because of his cultural background, he does not make eye contact with supervisors, appears very introverted by Western standards, sometimes misunderstands social expectations and the complex nuances of the English language, and gives the impression of being obsessively focused on his work.

One of his classmates, who is not an immigrant, exhibits precisely the same behaviors and has an Asperger diagnosis. He gets a job with the same company. Both of these young men soon become targets of bullying and discrimination in the workplace.

The immigrant, who clearly does not have a disability, files a complaint of an equal employment opportunity violation, claiming national origin discrimination. His autistic co-worker, on the other hand, does not belong to a protected group under the equal employment opportunity laws and can only claim disability discrimination, if he's to get any legal redress at all... but he is likely to have a hard time proving that he was targeted because he was perceived as having a disability. Chances are, he was just seen as different and weird, rather than as disabled.

Although this young man could perhaps win his disability discrimination lawsuit (and I'm certainly not trying to discourage anyone from filing such complaints), the root issue here isn't his abilities or the perceived lack thereof, even if that has to be the focus for legal purposes. The underlying issue is society's intolerance of anyone who deviates from its narrow cultural expectations.

Intolerance affects everyone. It's not the exclusive province of any particular minority group. Society is very fickle, and any of us might end up in a socially rejected group at some point in our lives, even if we originally were seen as part of the majority. In fact, that's exactly what happened to many autistics. When the Asperger diagnosis came into use in 1994, large numbers of people were classified as having a mental disability, even though their particular quirks previously had been accepted as within the range of normal human variation.

As I see it, the Autism Hub is the blogging equivalent of a diversity seminar in which people from different backgrounds get together and discuss how to overcome prejudice. Everyone's opinions and experiences are valuable in this context. When parents describe how they learned to accept their autistic child's differences, they are teaching other parents how to do the same. Although we may dispute whether these parents ought to be viewed as disability rights advocates, we shouldn't be so caught up in that dispute as to overlook the big picture—that what they are doing is vital to neurodiversity.

If Kev, Kathleen, and Estee all went out and got an Asperger diagnosis tomorrow, that would not, in my view, affect the validity of their message one iota.

We're all (I'll speak as much as I might for other parents here) neurodiverse (including the commented directly above me). "We will all be disabled one day" is a phrase mentioned often in disability studies circles and I think it very true, both in regard to physical and cognitive disability. Who's to know what a parent's, or anyone's, "underlying diagnosis" might or could be, or could become?

Joel -- you're quite right that it would be much more accurate, semantically, to call it the Diversity Hub or the Neurodiversity Hub.

However, there are practical reasons why that could not be done, starting with the fact that very few people had ever heard the word "neurodiversity" two years ago and wouldn't have had any idea what it was about. By calling it the Autism Hub, Kev was able to get high rankings in Internet searches for autism-related terms.

At some point, as neurodiversity becomes a more widely known concept, we might want to change the name to the Neurodiversity Hub or split the group in such a way that a more autism-specific group, led by autistics, would keep the name Autism Hub while general discussions of neurodiversity would move to a new Neurodiversity Hub.

I guess I misunderstood what it was. I guess it's not correct for us to identify as autistics, or identify us as having differences even from other people (at all, since by this new definition, everyone is "neurodiverse") that can be summarized by the word "autism"? Thus because we are speaking "everyone is equal" and nothing else, certainly nothing specific to people in the past called "autistic", there is no reason to seek the autistic voice over anyone else's voice when it concerns the people previously called "autistic"? This is all news to me.

Or am I misunderstanding what is being said?

I don't want to lose our allies, and I fear that's exactly what's going to happen in this debate, and it both pisses me off and upsets me. But at the same time, yes, autistic people need to be able to speak about autism, and need to be the primary source, not just "another source".

I don't think anyone on the Autism Hub has been saying that we shouldn't identify as autistic.

The way I see it, neurodiversity is analogous to racial diversity. It's a characteristic of the human species in general, not of particular minority groups. We are all neurodiverse in the same way that we are all racially diverse. Everyone has differences, but that does not mean that everyone is equal...

We can identify as autistic and discuss autism-specific issues in the same way that African-Americans, for example, might discuss issues specific to the needs of their community. But neurodiversity and racial diversity are broader concepts that include everyone.

Well, apparently the Autism Hub is a deceiving label to get better Google ranking (!?). It's really the diversity Hub (not the Neurodiversity hub, as that's just neurological things that we accept diversity in - it's just plane diversity). I didn't know that - I assumed the number of autism-related blogs made it an autism-related hub, not to mention the name.

It's okay to have autistic rights. Yes, that's part of the 'neurodiversity movement' (which I have yet to actually see in practice - it seems an "autistic movement with a few others movement" right now, despite the name, at least when you look at who identifies themselves as part of it). And that's part of the overall disability rights movement, which is part of human rights.

But that doesn't mean it's wrong to focus on autistic rights and when a group is focused on autistic rights (versus general human rights) to have autistic people's thoughts given more weight. That's what I'm after. I'm not saying the ACLU or such should be run by autistic people, but I am saying an organization focused on autism should place autistic opinion above NT opinion.

Now when talking specifically about neurodiversity, not autism specifically, yes, I can see an argument to include everyone as equals.

I always thought that was a given in the "neurodiversity" community when autism was discussed. But I guess not. I'm not sure I want to be part of a community that acknowledges equallity within itself but rejects the idea of autistic opinion being more relevant when it comes to topics discussing autism (versus explictly discussing human rights, disability rights as a whole, or neurodiversity as a whole). So I guess I'll not identify as part of the neurodiversity movement for the time being.

that doesn't mean it's wrong to focus on autistic rights and when a group is focused on autistic rights (versus general human rights) to have autistic people's thoughts given more weight.

As far as I know, nobody is saying that it's "wrong" to focus on autistic rights. Autism Hub has a more general focus, but that certainly doesn't imply there is anything wrong with groups that focus on autistic rights. It's just a different perspective.

I'm going to write another post addressing these issues sometime in the next few days... I have some more thoughts I'm kicking around.

I suppose in this context I am a "half breed" then because I am not purely autistic (if anyone really is)

When it comes to dyslexia, the same things are being said, I have a foot in that camp too.

Hell! the debates in the disability world are forthright and strong too.

I went to a conference celebrating 30 years of the social model or however long it was, to deliver a bombshell of a paper in its midst, quite expecting to be howled out of the place, but no, there is room for debate and my paper was well received, the disability movement has not polarised yet into factions who will not speak to each other.

The autism and neurodiversity movements have a lot to learn and a long way to go.

Time will tell what has become of this argument in another decade or two, but although I won't still be speaking, I am confident that the strongest voices will be those who have risked there credibility in speaking out for true autonomy and when it comes to authentic voices and autonomy I am with Joel.

Fore Sam and his bunch are destined for the dustbin of history even sooner, not point in taking notice of them any more than the flat earthers. The big debates need to be settled between us and it is not in the least unhealthy to do so.

I did not get where I am today by holding back on speaking out, I did not go into the NAS to make friends.

And yes I did need parent allies to get me into the NAS, Mike Stanton being one of them, and for what it is worth I nominated Mike to join me on the Council in return, so it is unfair to characterise me in any way as opposed or rejecting the help of parents, I cannot speak for Mike, but I suspect he agrees that the time will come for parents to take the back seat.

And again the reality as within my landscape model is one of overlapping sets geographical vs political borders.

I cannot speak as an autistic woman, or an ethnic minority disabled person,

I can however speak as a dyslexic, if you haven't experienced that then your voice is weaker.

I can speak as a visually impaired person, though not as a blind one, and I can speak as someone with physical disabilities.

I can also speak as a working class disabled person but not as working class black person.

It is never simple, but this much is so, respect means not only solidarity but allowing those who have the most right to speak on particular issues to do so.

In pan disability organisations the right for one to speak for another comes from the social model of shared oppression and common enemies.

I do not think that parents unless they are autistic, dyslexic, adhdd, tourettes, arthritic, schizophrenic, spinally injured can speak of the same oppression and stigmatisation unless they have experienced it directly.

My dad could have spoken for my autism if he had known, because he experienced it though he was not aware at the time which made my life in part so complex because of that terrible opposition of like against like seperated by upbringing culture and age.

Mum and I we spoke together, we were a team because I did not think as here "carer" and would argue with her about the movement and what came first. It was never her, and it was never me, it was the movement with which we had an equal but separate connection.

She fervently believed in nothing about us without us, she suffered the same put downs, the same problems of the great and the good speaking in goodly godly terms about "her" rights yet failing to arrange meetings where she was due to speak where she could actually get in, or that someone would have to take her to the toilet unless she were wearing nappies (diapers)

Larry, By virtue of the fact that some of us won't manage to get our kids cured, we are on the same side whenever you and your associates stop blasting those fortunate parents who do manage to accomplish the fete. That's the side of doing what's best for the kids.

The discussion being held here regarding neurodiversity and the Autism Hub and the discussion of the same two topics on Kevin’s blog don’t even resemble each other. The descriptions given on Kevin’s blog were anything but a seminar on diversity. In fact the word diversity itself became twisted to the point of meaning exclusivity. The Autism Hub was characterized as doing a disservice to the neurodiversity movement.

Surprisingly, some of the folks that posted on Kevin’s blog are also posting here.

Parents are needed, because not everyone who comes here is autistic. Many are parents looking for a positive outlook besides the crap that's out there in spades. It's what brought me to autistics dot org ten years ago. -I came, reading first the parent blogs because that's how I related. Do you know how I found it? By googling "the joy of autism". Weird, that was a a couple of years back.

I don't know what I am, but I'm pretty sure I'm not NT. Probably a "passer".

Now, I find myself perusing the blogs of people with autism, mainly because I like their logic and insight. Less of a diary and more of a collective seminar.

As I see it, the parents are the link between the uninformed and the enlightened.

I'm sure I'm looking at this too simplistically (I've blog-hopped and got somewhat caught up on all the debate these past few days) but I can't figure out why anyone wouldn't want parents, even NT parents, as advocates. Parents are the first advocates for their children, whether the child has a diagnosable disability or not. That's our job.

I take my role as a parent very seriously. I am an information seeker. And yes, I am my son's voice at times because he's only 6. I am his teacher, too. I want to empower him -- I have to be involved.

Also not all parents are non-autistic. I suspect some of the best parenting advice for autistic people may in fact come from parents who are themselves autistic and who have autistic children. If these parents didn't exist, I'd say, "Yes, we need to give NT parents of autistics more voice." But they do.

Yes, NT parents can and should speak - don't make this argument into a false dichotomy! But at the same time, autistic people need to be the ones "in charge". From what it looks like, that's absolutely offensive to some, but it's far more critical of an issue than whether or not people are chelating, then whether or not schools follow IEPs, or whatever else.

It's about whether or not we are seen - by our allies - as capable of directing ourselves. If our allies can't acknowledge this, all the great help in the world will mean nothing - it'll be rather like putting white men in charge of the NAACP (and, yes, I'm sure the NAACP acknowledges white men can help and contribute to their cause - but not as the leadership of their cause).

I'm particularly disgusted that anyone would think it is less important to give autistic people the lead in things relating to autism than to not offend. My people are in far more trouble than I thought.

But, once again, I have no problem with parents doing things. Even NT ones. Please read all my argument, don't make assumptions, and don't add to it.

As a mother who is raising 5 children with autism, it is my responsibility to educate the world into accepting them. This will not be as hard of a task as I once thought.I thank the Autism Hub for allowing me the chance to "educate" the world about my family.It would be a disservice to all but those who "HATE" autism to change the Hub.Jeanette

“it'll be rather like putting white men in charge of the NAACP (and, yes, I'm sure the NAACP acknowledges white men can help and contribute to their cause - but not as the leadership of their cause)”.

I have seen racial analogies used a number of times over the past few days, the above quote is indicative. I personally believe that the acceptance of blacks within the United States has not come as far as it should have in the past forty years. While the NAACP appears to be well run and responsible for much of the progress that has been made; I will only hesitantly ask if the less than stellar progress might in a way be attributable to a lack of diversity in the leadership of the advocacy groups supporting the movement.

In the business community there are thousands of very talented individuals, they run diverse organizations and produce amazing results year after year. I have often wondered what a person such as Jack Welch, former president of GE, (just to pick a name) would be able to accomplish for any movement or cause. I wonder if he would be rejected because of his skin color???

Factionalism does not appear to work very well. Just another point of view to consider.

The way I see it, allies are needed regardless of where they come from. I don't quite understand all the back-and-forth going on about what "neurodiversity" is and is not, and I think there's a lot of "talking past one another" going on (on multiple blogs right now).

One thing that confuses me is the notion of what it means to be "in charge". What does this mean, exactly? Does it mean taking on management tasks? Doing public relations work? Having a leadery-sounding title?

The issue - who's voice should be listened to when there is disagreement?

Autistic people (including parents who are autistic)?

Neurotypicals?

Big autism organizations?

Popular opinion?

Schools?

Personally, I think the "nothing about us without us" motto is a good one, and despite the fact that we'll screw up occasionally I actually have faith that my people can determine what is best for our people.

If an ally disagrees with autistic people, who is right? Is an ally really an ally if he acts against the wishes of the majority of autistic people? But if allies have just as much of a voice as us, then I guess that disagreement can't exist or we are no longer an ally of an ally.

Call it identity politics if you want. Call me an asshole, I'm fed up. I'm sick of being ignored, and certainly sick of being told that my voice about my own condition is no more valuable than Autism Speak's or whatever else. We wouldn't want to upset anyone, after all - and thus if an autistic person disagrees with an ally, it's the ally that must be right, or so the argument is seeming to go.

Joel said: who's voice should be listened to when there is disagreement?

Autistic people, of course.

If an ally disagrees with autistic people, who is right?

It depends on the situation, and it also depends on what the group of autistics in question are saying. There are some self-loathing autistics out there who think that they and all other autistics should be cured -- and I wouldn't like to see them become a majority, if they aren't already.

Is an ally really an ally if he acts against the wishes of the majority of autistic people?

No, but right now I don't personally know what the wishes of the majority of people are. My own advocacy position is based on the fact that (a) I am autistic and don't want a cure, and (b) I think that most of the reasons behind the push for "cures" are based in bigotry, prejudice, and social pressures that result in autistics hating who they are as they grow up. I don't think it's the majority view that matters so much as the ethically correct view. I personally work on the basis of principles, not majorities. But in the hypothetical sense, I imagine that most autistics would be fine being autistic if there weren't so much prejudice and inaccessibility in the world.

But if allies have just as much of a voice as us, then I guess that disagreement can't exist or we are no longer an ally of an ally.

Not everyone who calls themselves an ally actually is -- I don't doubt that "Autism Speaks" thinks of itself as a group of allies for autistics, but that doesn't mean they actually are. I think that allies are important, but that autistics should be the final arbiters as to who constitutes an ally.

"While the NAACP appears to be well run and responsible for much of the progress that has been made; I will only hesitantly ask if the less than stellar progress might in a way be attributable to a lack of diversity in the leadership of the advocacy groups supporting the movement."

That might be true--but only because so many whites in our society are more inclined to pay attention when a white person talks than when a black person does. And that's just wrong, especially when the subject is racism and other issues affecting blacks. These are the people who know the issues better than anyone! Similarly, there are people who may be more willing to listen to a (presumably) neurotypical parent than to an autistic person, even an autistic person who is also a parent. While I think neurotypical advocates are important to the movement (just as whites are to the civil rights movement, straights to the gay rights movement, etc.) there's also a danger that society will pay more attention to the priviledged group when really, it should be the other way around. Which is not to say that there isn't a role for allies in the movement. Phil Schwarz's piece on this, adapted from a piece about male allies in the women's movement, describes the role of allies quite well.

"They understand that autistic people's empowerment is not a threat, but rather an additional strength."

"They do not try to define the problems that autistic people share with them."

"They work to help unburden other non-autistic people of the misconception that autistic self-advocacy is about "attacking parents""

"They are willing to hear autistic people's reality "full out", with the realization that there are aspects of this reality that will be foreign to them."

"They understand that autistic people know that all non-autistic people are not "the enemy"."

"They listen, but don't try to "fix" the problem by themselves."

That stuff I see missing in a lot of this discussion.

Larry pointed out a couple of real problems: Parental power and over-focusing on mercury.

Everyone is in some kind of uproar like his little tiny statements on this are going to take down the whole community and are attacking parents and so on and so on and so forth. Like he's done something utterly and totally evil and destructive and massive.

Meanwhile look no further than the hub and you'll find several blogs talking about destructive things (such as brain-damaging neuroleptics) parents are doing, not talking about doing, actually doing, and justifying, on hub blogs, right now.

And I'm willing to bet if a bunch of autistic people carried on about that to the same level people are carrying on about Larry's blog post — even though we'd be a lot more justified in doing so than the people objecting to Larry's blog post seem to be, in terms of the actual harm done to people — then the parents in question would yet again become the victims of autistic people somehow.

Part of being an ally is not flipping out and making it all about you and your hurt feelings when someone raises a criticism that seems to be directed at the power given to a group of people that you belong to.

And all I see is some stuff Larry said, that I don't 100% agree with, but that I agree far more with than I agree with the storm of people flipping out about how their "safe" (since when??) community has somehow been turned upside-down by Larry bringing up these points.

And yet somehow I think the blame in the end is going to fall on Larry.

Which makes no sense to me. The direction this has taken shows clearly that the power issues he describes do indeed exist.

It's like a feminist complaining about the amount of men who get heard over women when it comes to women's issues, and a bunch of men flipping out and calling said feminist a man-hater and saying maybe they ought not to support feminism after all and so on and so forth. The response is disproportionate compared to what was said.

Not only that, but the amount of time that autistics now have to spend reassuring non-autistic (and possibly some autistic-but-passing) people that they're not the "bad" ones. I don't really think it should be necessary for us to spend a lot of time reassuring people of that.

Can you point me to the place where someone said that the hub doesn't feel "safe". I know it's out there somewhere but I didn't read it closely or haven't seen it.

Can you point me to the place where people are "flipping out". I'm not being antagonistic, I'm trying to map what happened.

I see that Larry's original points on Club 166 were fairly mild, but I think his "casa nostra" comment was dumb, for it's choice of words, mainly.

I think the reality is that THE PARENTS one of which I don't consider myself, are going to outnumber the autistics adult advocates for a decade or more, just because of the reality of who has a diagnosis these days, that's the kids, and the adults while the majority don't have a dx and might not be advocates anyway because of having been abused for so long and being in fear of speaking up, or they might not be interested in autism period and so won't talk about it.

It may be true in the abstract that autistics should be the voice of autism, but for now they're the minority, and they might even be the minority among "neurodiversity leaning" blogs and websites.

So? Do we need to come along and shut the mouths of parents who are advocating in whatever whay they are, maybe not so good or maybe badly (giving their kids neuroleptics and blithely sharing that fact as if their decision stands alone, and is not part of a big picture of horrific neuroleptic abuse imposed on autistics that has killed many autistics and destroyed the health and more of others.).

We can't shut anyone's mouth. That's pragmatics. We can only keep advocating and explaining, and sometimes throwing temper tantrums out of frustration... and whatever else we can to keep the dialogue more helpful and positive for autistic people.

I just don't get Larry's statement, and I think Joel said it too, that the big voices "need to be" autistic voices.

Even if the "need to be" or "should be"

what if they aren't?

The leaders "need to be" autistics.

What if they aren't? Practically. Realistically. What can be done besides yelling that they "need to be" autistic? I think it's going to take a long time to get the big voices in autism to be mainly autistic voices. I keep yelling, believe me.

We need to do what we can with the voices we have, and maybe work at recruiting more autistic adults to speak out.

As for the "need to", that means NTs who realize they might be in a leadership role, if they are true allies, will be trying to figure out how to pass that leadership role to an actual autistic person, not how to preserve their status in the community.

It was my hope that this was how everyone thought that was involved - but now I have real concerns that many NTs really do want to hold onto the status.

I don't expect non-allies to do anything different. I do hope that allies recognize that this isn't their movement, and that they serve at our pleasure. That's not detracting from what they do, but the reality is that we're the ones that need the power (as in "empowerment"), and this should be the direction we're going.

They key is - when actual autistic people disagree with our allies, who is right? If all voices have equal right to speak in advocacy, then the autistic voices are "outvoted" by the non-autistics. That's a problem and should not exist.

No one is saying "NTs, go home." We are saying, "NTs, listen to *us*."

Who does all the work to keep the Autism hub up and running? My vote would be for whoever can do a good job and is willing to do it.

Any one of us could have a stroke and be paralyzed or have any one of a zillion neurological problems tomorrow.

What is "needed", is someone like Bill Clinton, who was a great leader. What so infuriated the GOP was that he would figure out which way they were trying to go, then go out and get in front of that parade.

I think (but I really only speak for myself), that most ASDs don't want to be "leaders", and therefore be in a position of notoriety. I certainly don't.

ForeSkin: "Camille, That's a great idea. Now tell Kevin, Kathleen and Estee to close down their blogs so sane people can help the autistic people get better."

You can stop having your orgasms now, John. You don't need them. Get a better sex life that the one you have at this time (which is creaming your pants over a disagreement in a bunch of websites); which disagreement defines the bunch of people to whom those sites belong as being sane enough to - whatever their constructions of other people's statements made during this disagreement - not follow party lines, which is exactly what you expect in your corner of the blogosphere.

The Hub - such as it exists at this time - is still that bunch of sites; it contains no sheep. Hating Autistics (the hidden-meaning name for your pathetic attempt at a blog) is full of sheep... everyone following the 'great man himself' - FuckSam-IWantMyGamblingCashFromEliLilly.

Big difference between the Hub and your corner of the blogosphere, John: everyone here is intelligent enough to know when to disagree (even if communicative-style differences come close to fucking the message up). At least this is meaningful communication... you don't have that.

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About

This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010